Don't Wait for the Side of the Road- A conversation we need to have before we need to have it.

Written by: Meredith Paci, Functional Health Coach

There is a phrase I have heard for years. From families, from friends, from well-meaning professionals who should know better.

"Well, he hasn't wandered off yet."

As if that is the line. As if a grown man (or woman) standing confused on the shoulder of a highway in his pajamas is the threshold we are supposed to wait for before we act. As if the crisis is the permission slip.

I am here to not only challenge this, but bring awareness to a time that no one wants to talk about let alone think about. And I am telling you right now that by the time someone you love is wandering on the side of the road, you have already missed hundreds of moments where something could have been different.

Dementia Did Not and Does Not Show Up Overnight

My dad, Ron, was proud. He was an elder in every sense of the word, a man who had lived a full life, traveled the world, served his country, had family. Society tells us that our elders are wise and mighty. That they have it figured out. That their autonomy is earned and untouchable.

And in many ways and cases this may be true.

But what no one prepares you for is what happens when the person who is supposed to have it all figured out... doesn't at all, now, and yes in many cases has never. What happens when pride and ego become the walls that keep help out. What happens when the loneliness of losing a spouse quietly dismantles someone from the inside and the people around them don't see it because they are still looking for the big, dramatic, undeniable moment.

I have said it before in other blogs…dementia does not show up overnight …. Most disease and condition states don’t… dementia did not show up overnight for my dad. It crept. It built slowly in the background while grief and isolation did their work. He lost my mom almost nine years ago. He was alone. And instead of moving closer to family, instead of choosing a community where he could have independence with a safety net around him, he stayed isolated and began isolating even more. Because that is what pride and fear does. They can cause you to freeze, fight and retreat…hold you in place that although feels familiar and familiarly feels safe.. Is anything but safe. 

I understand that. I respect it. And I also know it nearly cost us everything…we were lucky though.

The Myth of the Defining Moment

We have been conditioned to wait. To wait for the fall. The car accident. The 911 call. The knock on the door from a stranger who found your father three miles from home with no idea where he was, who he was …

We wait because we have been told  culturally, medically, even legally that we cannot intervene until there is evidence. Until there is a moment so frightening, so undeniable, that it overrides someone's right to choose for themselves.

And I understand the logic behind that. I do.

But I also know what happens in the space between "something isn't right" and "something terrible happened." That space is where people get hurt. That space is where families fracture under the weight of trying to honor someone's wishes while watching them decline. That space is where guilt lives — the guilt of not doing enough, not pushing harder, not saying the thing you were afraid to say.

My dad did not want to leave his home. He did not want a community let alone a community with attached care. He made that clear. And as his daughters, we choose to honor that…waiting until something or someone told us differently.

But here is the truth I have had to sit with: what I wanted for him was different from what he wanted for himself. I wanted him closer to family. I wanted him in a community that gave him full independence but had healthcare professionals checking in. I wanted someone to take the pressure off him... the loneliness, the fear, the weight of managing a life alone when his brain was quietly leaving him behind.

I wanted to give him the most basic things a human being needs. Safety. Security. The foundation of Maslow's hierarchy. The ground floor. And even that felt impossible because he was an adult. He had the right to say no. And he did.

And respectfully, that wasn’t what he wanted. I was what I wanted…and I always understood that.

Holding Two Truths at Once

This is the part that will keep you up at night if you let it, and I need you to hear both sides of this.

You cannot force someone to make choices they do not want to make. A parent, a spouse, a sibling ….a client… They are adults. They have agency. And no matter how clearly you can see what you feel they need, there is a very thin line… a slippery slope of getting to override their will because you are afraid or concerned for them. It can easily not be because of love. It can sadly in some cases be control dressed up as concern, and most of us know the difference even when we don't want to admit it.

And.

You also cannot afford to be naive. You cannot sit in the comfort of "well, they seem fine" and use that as your reason to do nothing. You cannot wait for the defining moment... the wandering, the fall, the stove left on ... and then act surprised that it got this far.

All of these things are true at the same time. You must respect someone's autonomy while also refusing to be passive about their safety. That is not a contradiction. That is emotional rollercoaster on fire of loving someone through cognitive decline.

What does that look like practically? It looks like having hard conversations early, NOT when you are in crisis, but when everyone is still clear-headed enough to participate. It looks like putting things in place before they are needed. It looks like asking questions that ARE absolutely uncomfortable and doing the administrative work that feels morbid but is in fact one of the most loving things you will ever do.

The Conversation Before the Crisis: What You Need in Place

I am not a lawyer. I am not a financial advisor. But I am someone who has watched my family go through this multiple times and walked into a situation that, although a lot was done, was still messy. Without all of these pieces in order… kept current, understood, and accessible… I have lived how much harder everything becomes when you are scrambling.

This is not an exhaustive list. It is a starting point. Treat it as the opening of a conversation, not the end of one.

Durable Power of Attorney and know that there are two. Financial power of attorney and medical power of attorney are separate documents. Do not assume one covers both. They don’t. Get both executed while your loved one is still legally competent to sign. Once cognitive decline crosses a certain threshold, this becomes exponentially more complicated and may require court involvement. And please hear me when I say this… my dad went from competent to fully incompetent delirium in 48 hours. You do not have as much time as you think you do. One more thing: choose a POA who genuinely wants the role, not just the person who happens to live closest. My sister and I traveled internationally and drove across two states. We were there within 24 hours. Distance is a logistics problem. It is solvable. What is not easily solvable is scrambling to change POA status in the middle of a crisis because the person assigned to the role was never truly prepared to carry it or did not desire to have it. Again solvable, but an unnecessary layer of complexity to an already complex time.

A Designated Medical Advocate. Someone, ideally not the same person managing the finances, who is authorized and prepared to make medical decisions on behalf of your loved one. This person needs to know your loved one's values, preferences, and limits. Not just legally. Personally.

Medical Insurance and what it actually covers versus what you assume it covers. Medicare, Medicaid, military benefits, private supplemental plans: they do not all work the same way and they do not all cover what you think they do. My dad was "healthy as a horse" on paper. Hypertension and not much else. He had excellent prescription coverage, but he was on two prescriptions. The coverage he was paying for did not match the coverage he actually needed. His nursing home coverage was tied to physical inability — if he could walk a certain number of steps, coverage ended. The problem? The first 3 days of this situation, he was physically capable enough to pass the walk-with-assistance test. So he was physically capable and mentally NOT capable in every form. We had roughly 72 hours to move my dad across state lines and into a memory care facility while simultaneously trying to transfer his coverage. Learn what your loved one's plan actually pays for. Skilled nursing, memory care, custodial care, in-home care, transport, prescriptions — these are different categories with different rules and wildly different price tags. Do not wait until you are standing in a hospital hallway with a 72-hour window to find out you have nowhere to go with them.

DNR Status and understand it is not universal. Did you know that ...a Do Not Resuscitate order executed in one state may not be honored in another...or at least may not be honored as it was intended? If your loved one lives in a different state than where they may receive care or if they are being transferred across state lines you need to know whether their DNR travels with them. POLST forms, which go by different names depending on the state (MOLST, POST, COLST), also vary in legal standing. Do not assume portability. Do not assume translation. Verify it.

An Advance Directive or Living Will. This documents what your loved one wants, and does not want, in terms of medical treatment if they cannot speak for themselves. Ventilators. Feeding tubes. Resuscitation. And not just whether they want these interventions, but what each one actually means in practice. These are decisions no one should be making for the first time in a hallway or a car ride.

An Executor of the Estate and understand this is not the same as a POA. Power of attorney is for the living. It gives someone authority to act on your loved one's behalf while they are alive but unable to manage their own affairs. It ends at death. An executor is for after. The executor is named in the will and is responsible for carrying out your loved one's final wishes settling debts, distributing assets, closing accounts, managing property, filing final tax returns. These are two completely different roles with two completely different timelines, and they do not have to be the same person. In fact, it may be better if they are not. The person who is best suited to advocate fiercely in a hospital room or manage day-to-day finances during a decline may not be the person best suited to navigate probate and estate administration after a death. Have the conversation about both roles. Name both people. And make sure each one knows what they are agreeing to not in theory, but in practice.

Bank Accounts. Joint access or at minimum, clear documentation of accounts, institutions, and login credentials. If your loved one becomes incapacitated and you are not on the account, accessing their funds to pay their bills, their debts, and for their own care  long-term or short-term becomes a legal process. One you do not have time for in a crisis.

Life Insurance Policies. Know what exists, where the policies are held, who the beneficiaries are, and what the terms look like. This is not a conversation about money. It is a conversation about not being blindsided when you are already overwhelmed.

End-of-Life Wishes. Burial or cremation. Service preferences. Specific requests. Get them in writing. A conversation about hypotheticals over dinner is not documentation. People forget what was said. People disagree about what was said. People change their minds! Write it down.

And once these documents exist, make sure more than one person knows where they are. A drawer or filing cabinet nobody else can access is the same as having nothing at all. And if they are in a fire proof safe....where are the keys kept? 

This list is not anywhere close to complete. Your family's situation has nuances that no checklist can fully cover. An elder law attorney, a financial planner who specializes in aging, and your loved one's primary care provider are the starting points for filling in the gaps. The point is not to have every answer today. The point is to start.

This Is Not Someone Else's Story

I write this as a daughter. I also write this as a functional health coach who works heavily with women and men …people who are building careers, raising children, managing their own health, and who will most certainly, at some point, find themselves standing exactly where I stood. Looking at a parent. Looking at a spouse. Looking at someone they love and realizing that the ground has shifted underneath them without warning.

This will touch your life. Maybe it already has. And the single greatest thing you can do,right now, while things feel stable is refuse to wait for the side of the road before you have a very direct discussion.

Have the conversation. 

Create the folder. 

Get legal advice. 

Ask the uncomfortable question. 

Put the paperwork in place…know where the paperwork is!

Have someone who knows the usernames and passwords! 

Not because something is wrong today. Because you love someone enough to make sure that when something does change, you can focus on the here and now ….their immediate medical care. You will still, regardless of how prepared you are, have to deal with things but trust me having these things in place will help.

My dad taught me a lot of things in observing his life and most certainly in his final 3 weeks. And in his decline, he taught me something I will carry with me for the rest of mine: love is not just showing up when things fall apart. Love is being willing to have the conversations about building the structure before they do….

Don't wait for the side of the road.

If this resonated with you, share it with someone who needs to read it. Not because they are in crisis but because they are not. Yet.